Hernia registries have proliferated in recent years but would contribute more to the evaluation of treatments and outcomes of hernia repair if the data quality was uniform, according to a study of one U.S.-based and six European registries.
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The CORE (Comparison of Hernia Registries in Europe) project was initiated in 2015 by a group of to survey the defining characteristics of each registry and compare their features. Each registry has a unique profile of data collected, basis of participation, and financial support.
“Despite the differences in the way data are collected for each of the listed hernia registries, the data are indispensable in clinical research. As a consequence of the numerous innovations in hernia surgery (surgical procedures, meshes, fixation devices), hardly any other area of surgical study has such a high need for clinical trials and data collection, comparison and analysis. Registries play a vital role in this innovation process,” the CORE investigators wrote.
The project collected information about the Danish Hernia Database (DHDB, the Netherlands), Swedish Hernia Registry (SHR), Herniamed (Germany, Switzerland, Austria), EuraHS (Belgium), Club Hernie (CH, France), EVEREG (Spain) and the Americas Hernia Society Quality Collaborative (AHSQC, the United States). Representatives of each registry provided details of the size of database, the types of cases contained in the registry, the terms of participation, operative data collected, and registry sponsors.
The DHDB and the SHR have the longest histories (created 1992 and 1998, respectively) and contain the largest number of cases (more than 200,000). The SHR has data from more than 95% of all national inguinal cases, and about 15% of ventral and parastomal cases). The DHDB covers 90% of all inguinal cases and 80% of all ventral and other types of hernia. These two registries are publicly funded, nonprofit institutions.
The other registries are of more recent origin (2007-2015), cover a lower percentage of the hernia cases in each country, but nonetheless have accumulated a large number of cases (for example, Herniamed has data on more than 290,000 inguinal cases and almost 200,000 ventral and other types of hernias). These registries are industry funded and participation by surgical centers is voluntary.
These seven registry differ primarily in the kinds of data they collect. The DHDB collects far less data than do the others on complications and, in particular, no data on mesh complications or pain. And although each of the other registries covers a long list of complications, the lists are far from identical, according to the CORE project investigators.
Follow-up protocol also varies considerably among the registries. The CORE investigators note that the “limitation of all data analysis from registries is always selection and input bias,” and the potential of combining the data from all of the registries into one database could only be accomplished if the uniform quality and consistency in data collection were assured.
The CORE project was initiated with registry representatives and each was were responsible for the information about their registry. Conflicts are reported for each contributor on the Hernia website.
SOURCE: Kyle-Leinhase I et al. Hernia 2018;22(4):561-75.